New to treatment

[buglin]

Began treatment of calquence one month ago with no bad side effects but my doctor wants to add gazya in 10 days. I have responded quite well with most of the enlarged nodes now gone. I trust my doctor but reading all the bad reactions everyone on this site has suffered to this medication has me panicked. Has anyone received this treatment with only minimum side effects? Really scared. I am 11q unmutated. Thanks for any help.

[DRM18]

Hi buglin.

I was fortunate enough to experience no reactions nor side effects whatsoever, as far as I can recall.

I enjoyed the relaxing infusions, and I missed them when I was finished.

Your mileage may vary, of course.

--Dave!

[buglin in reply to DRM18]

Thank you for your feedback, hopefully i will be so lucky.

[Thundercat2]

Greetings from a fellow 11q unmutated CLL'er. It's always uncertain when we first enter new territory and a lot of us have been in your shoes! But the good news is many of us have gone through the initial phase of Gazyva with NO problem at all. I have had it 2x. The first time virtually no reaction at all. The second time I did have one but I had a lot of other medical things going on at the time too. And the nurses and docs knew exactly what to do and it passed quickly. I think you will do just fine. It sounds like your doc has you on Calquence to help avoid any issues and if your nodes are down that will help a lot. I spent a lot of time snoring in the chair

Warm wishes to you for an uneventful start up.

[buglin in reply to Thundercat2]

Thank you for replying with your experience, I am so glad to hear you did well and hope I am one of the lucky ones. After one month under treatment, my blood has improved and I feel so much better, hope this treatment only makes it better.

[may04cll]

Is Calquence + Gazya now a time limited therapy ?

[buglin in reply to may04cll]

My doctor advised that I will complete 6 rounds (1st round will be split into 3 weekly sessions and 5 monthly treatments thereafter for 6 months) of gazya . But I think I will continue to take calquence.

[stevesmith1964]

HiI had 6 cycles of Gazya when I was diagnosed stage 4 in Nov 2020, no side effects at all.

I.was in uMRD within 243 days.

,

[kitchengardener2]

Not heard of Gazya?

I have been on Acalabrutinib Calquence) since August 2021. I was given Allopurinol for three cycles and then it was stopped. I have stayed on Aciclovir and Co Trimoxazole. No nasty side effects and blood back in normal ranges.

I feel incredibly well.

Good luck.

[Sushibruno in reply to kitchengardener2]

Im starting to feel what "well" feels like again🙂. It's only been 15 days on acalabrutinib 🙃.

[kitchengardener2 in reply to Sushibruno]

That's just brilliant news!!Bless you, stay safe

Alice xx

[Sushibruno in reply to kitchengardener2]

Thanks Alice, you too.

[peacethruthestorm in reply to Sushibruno]

That is awesome!

[Sushibruno in reply to peacethruthestorm]

🙂😊

[Edalv in reply to Sushibruno]

I am glad to hear that… great news… 👍

[Nucleusman]

Been on Calquence since October 1. Bit of diarrhoea but nothing else so far. Got Covid but not sure if this contributed as warned likely to have lower resistance to infections

[larrymarion]

congrats on the improvements due to Calquence. I, too, am 11q and unmutated. also complex karyotype. I had been treated with traditional chemo (PCR and BR) before i started on ibrutinib for 5.5 years and then venetoclax.

Here are a few questions to ask your hemoc before starting obinutuzimab, a.k.a., Gayzva:

what is the reason to add gayzvia now? How will it improve outcomes beyond use of calquence alone? What clinical trials/data support adding it now?

What will be the impact of a cd-20 drug like obinutuzimab on future vaccines? Is he aware of the LLS research showing that antibody production from COVID vaccines is inhibited by obinituzimab and other CD-20 agents?

Have you had shingrex shots yet to prevent shingles (I'm assuming you're at least 65 years old)? Has the hemoc discussed with you how the shingrex vaccine may be rendered useless if you get the shot while on obinituzimab?

[buglin in reply to larrymarion]

Thank you for the list of questions, I will Follow up with my Dr. He did state that studies show a longer remission with this combination. He stated that most of his patients are fine after 5 years, I know everyone is different, just hoping for a good outcome.

[Smakwater]

What is the Doctors reasoning for adding the Gazyva?

[julieS3]

hello! I finished the 6 cycles of Gazvya. I had a slight reaction about 1/2 hour into the infusion of nausea. The treatment was immediately stopped and adivan was added then restarted. No more nausea and I had a nice nap the rest of the infusion. After that adivan was added for every infusion. No more reactions. I am 2+years into treatment of I&O my numbers are all normal and I feel great. I am trisomy 12/11q deleted. I hope you the best!

[buglin in reply to julieS3]

Thank you for responding, I am glad to hear you have done well on this treatment. Hope I will be so lucky.